T + 2526 Hopefully going home (again)

Despite all of my good intentions, conscientious self care and best efforts at not being a dick, I have been unable to keep myself out of hospital. Today is Friday 13th September 2019 the end of my first week of readmission to Kings College Hospital. Symptoms pretty much identical to last time except swap out the kick off point from obscenely swollen right foot to super puffy right hand.

The rest of my joints are chiming in at various levels of red light/distress and thankfully this time I’ve kept enough sense about me to check in before things scream wildly out of control. I’ve dodged a stint in ITU this time around but I’m very doped up on both slow and fast release oxy, cocodamol and Prednisone. Oh yeah and the left side of my face looks like I’ve got a huge port wine birth mark. It’s not unlike Harvey Two Face from the Batman graphic novels.

FLIBBADAFLIBBADAFLIBBADAFLIBBADATHUUNK!!!! - fast forward now - to 11th January 2020. I haven’t felt the need to update as this sojourn has been a Ground Hog Day kind of thing, vomiting, inability to eat, temperature spikes - together with my hands and feet swelling and deflating with the tide. About 4-5 weeks after my readmission, KCH rare diseases made a breakthrough by tracking down the bacteria responsible for the whole damned thing.

‘That’s clearing up nicely Mr Storey’

It’s called Charisma Excessiva and it’s...ok, no it’s called Mycobacterium Marinum  ha ha auto correct just turned that into ‘perineum’. It is incredibly rare only 300 people in the US caught it last year, which by my dubious maths equals 0.000004%  or 28,000 people globally. It is contracted via contact with live fish, healthy people with uncompromised immunity systems would not be at risk. We wracked our brains to work out how I might have come across it and came up with two scenarios;

1) I may have contracted it whilst cleaning out the filter on our koi pond, gloveless and with an open wound on my hand. The bottom of the filter is a sludge of fish plops and I had my hands in there scooping it out.

2) ...and this is the preferred option, that I contracted it taking Milo dinghy sailing at Bewl Reservoir in summer 2018. I had large cuts on both shins from falling down the cellar stairs. At that time there was an out break of blue algae at Bewl and signs indicated that dogs should not be allowed in the water as it could prove fatal. Wearing only shorts and flip flops, I used to push Milo’s dinghy down the launch ramp on it’s trailer and into the water. After my diagnosis, a little digging by Jeannette revealed that Mycobacterium is produced by blue algae, and SHAZAAM there you go option numero deux.

When finally diagnosed it was found that the bacteria had so completely penetrated my system that it would take a long time to be purged. I will be taking a cocktail of three antibiotics for at least the next 18 months. I’m not going to hold my breath, but I’ve just been advised that I can go home later today (January 11 2020) exactly a year since I was first admitted.

I have spent 302 of the last 365 days in hospital I feel hugely grateful for the NHS who plugged away exploring obscure options until they came up with a diagnosis. At various times during my stay I was seen by the following departments - Dermatology, Haematology, Rheumatology, Rare Diseases, Ophthalmology, Dieticians, Pain Management, ECP and the Diabetes Department and had all the scans that it’s possible to have.  The care I’ve received has been above and beyond I hope to can repay their efforts by staying out of Hospital long enough to live some life this time around.